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Ethical Dimensions of Public Health Surveillance

Individual privacy rights must be balanced with the collective goal of population health, argues the co-author of new WHO guidelines on public health surveillance

Public health begins and ends with surveillance. Without knowing some basics like who has a disease and where are they located, it becomes nearly impossible to intervene. However, public health surveillance often raises concerns about privacy and civil liberties. Health officials, for instance, might have to contact individuals with disease. Interventions might involve measures like isolation or mandatory treatment. Even the appropriate release of aggregate data can create fears of stigmatization.

Transmission spoke with Ron Bayer, professor of Sociomedical Sciences, who helped launch a World Health Organization examination of the ethnical dimensions of public health surveillance. The result, Guidelines on Ethical Issues in Public Health Surveillance, was published today. Amy Fairchild, co-chair of the Columbia University’s WHO Bioethics Collaborating Center with Bayer and Associate Dean of Academic Affairs at the Texas A&M School of Public Health, co-chaired the committee that drafted the guidelines. Bayer, Fairchild, and James Colgrove, professor of Sociomedical Sciences, are also co-authors of a 2007 book on public health surveillance, Searching Eyes.

What are the debates around public health surveillance?

The history of HIV/AIDS provides an interesting example. In the early days of the crisis, AIDS became a reportable condition in every state very quickly, often with the support of the early generation of AIDS activists. They want to know what was going on: who was getting sick, why they were getting sick, and where the illness was. But when it became possible to screen for HIV, a virtual war erupted between privacy activists and AIDS activists. There was fear that if you mandated HIV infection reporting it would discourage people from being tested. In a situation where we want people to know if they have an infection so they won’t spread it, the argument was that surveillance was counterproductive.

IS this kind of argument valid?

Almost everyone who looked at the ethics of public health has concluded that individuals should not have the right to refuse surveillance for reasons of privacy. There is very good reason: If people can opt out of surveillance, you risk having skewed data. The core of public health ethics is the protection of and the wellbeing of populations. It’s not just that surveillance is justifiable—it is is an ethical failure to not do public health surveillance.

What if a country can’t afford to do surveillance?

We argue that there is a moral obligation on the part of well-resourced countries to underwrite the cost of surveillance in less resourced countries. You could argue that doing so is in their own best interest because, for example, surveillance can help stop a disease outbreak from spreading to neighboring countries and around the world. Fundamentally, however, we have a moral obligation to support public health surveillance out of a sense of global justice.

Is there a risk that public health surveillance data will be misused?

The WHO guidelines we drafted state that surveillance data should only be collected for a legitimate public health purpose. Obviously, a government should not use this surveillance data, for example, to arrest gay people or sex workers. Only under very rare circumstances, should public health surveillance data be used to inform the activities of police, and not without the due process procedures in a court. People also have the right to know if a public surveillance program is in place. Moreover, public health officials have an obligation to report back what they have learned from this surveillance and what they’re doing with it to improve health.